Since life has gotten so hectic these days in the Davis household. I've put together a video recapping some photos / video clips from early 2010 - 2011 (up until we moved to Florida in April). Warning -- This video is quite long so be prepared.
Overall, we've gone through so much in the past 2 years and wanted to condense in a 15 minute video what life was like. Enjoy and hope you are all having a blessed day!
Welcome to the source to get all news about Milaniya's life, condition, and the journey she has with her family. Stay tuned for more updates!
Monday, August 22, 2011
Tuesday, December 28, 2010
December 2010 Update
Hi Everyone:
December has been a busy month for the Davis household. We've been getting a lot of rain here in San Jose so when it does not rain we take full advantage of the weather. This month as a family we've gone to the annual Christmas in the Park where there are local businesses, schools, and charities that decorate their own tree where it is displayed to the public. This is walking distance from where we live so it was nice to enjoy this event that attracts thousands of peope.
This whole month Milaniya was extremely excited since this was the 1st year where she really understood what was going on with Christmas and could truly enjoy all her gifts Santa brought her. She received a kitchen (pink vintage), portable DVD camera, and many other things from Santa (aka mom/dad). :-)
As far as myself (mom) goes I started to get involved with some of the social meet up groups hosted here in the area. Recently I was able to attend a dinner at Spaghetti Factory and met almost 20 women who are too new to the area. They really made me feel welecomed. Was a little hesitant and shy, but I got over it quickly. My 2nd meet up with the group was a Cookie Exchange Party, which I baked some hazelnut tea cookies. Yum! Would highly recommend this for next year or for those who like to entertain as a party idea.
Ohh, I almost forgot I went to Las Vegas early December with Milaniya to visit my sister Sarah and the family. The trip went by way to fast. I enjoyed spending time with the kids and also my sister. Nothing better than shopping, eating, and of course doing a little gambling. :-)
As for Eddie, he's been busy at work and still getting adjusted to his new job as Engineering Manager. He really enjoys what he does A LOT. Anything regarding Fire Protection and Life Safety he's all about it.
Sooo, I leave all of you with some videos I've uploaded recently (some are old) and some recent pics from this month.
Take care and have a wonderful New Year as we begin setting memories for 2011!
Milaniya going from 3 to 16 Yrs Old (LOL!):
Visit to Las Vegas:
Enjoying the outdoors with the family ~ Milaniya running so cute:
Pictures from December:
December has been a busy month for the Davis household. We've been getting a lot of rain here in San Jose so when it does not rain we take full advantage of the weather. This month as a family we've gone to the annual Christmas in the Park where there are local businesses, schools, and charities that decorate their own tree where it is displayed to the public. This is walking distance from where we live so it was nice to enjoy this event that attracts thousands of peope.
This whole month Milaniya was extremely excited since this was the 1st year where she really understood what was going on with Christmas and could truly enjoy all her gifts Santa brought her. She received a kitchen (pink vintage), portable DVD camera, and many other things from Santa (aka mom/dad). :-)
As far as myself (mom) goes I started to get involved with some of the social meet up groups hosted here in the area. Recently I was able to attend a dinner at Spaghetti Factory and met almost 20 women who are too new to the area. They really made me feel welecomed. Was a little hesitant and shy, but I got over it quickly. My 2nd meet up with the group was a Cookie Exchange Party, which I baked some hazelnut tea cookies. Yum! Would highly recommend this for next year or for those who like to entertain as a party idea.
Ohh, I almost forgot I went to Las Vegas early December with Milaniya to visit my sister Sarah and the family. The trip went by way to fast. I enjoyed spending time with the kids and also my sister. Nothing better than shopping, eating, and of course doing a little gambling. :-)
As for Eddie, he's been busy at work and still getting adjusted to his new job as Engineering Manager. He really enjoys what he does A LOT. Anything regarding Fire Protection and Life Safety he's all about it.
Sooo, I leave all of you with some videos I've uploaded recently (some are old) and some recent pics from this month.
Take care and have a wonderful New Year as we begin setting memories for 2011!
Milaniya going from 3 to 16 Yrs Old (LOL!):
Visit to Las Vegas:
Enjoying the outdoors with the family ~ Milaniya running so cute:
Pictures from December:
Wednesday, November 24, 2010
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Friday, November 19, 2010
Officially a "California Girl...."
Hi everyone,
Where has the time gone? This month has been particularly busy for myself. I've officially become a California resident. I was quite surprised by the process of getting my car registered and how much it cost! The crazy thing about the process was a written exam I had to pass in order to receive a drivers license. I have to admit was caught off guard and unfortunately did not pass the first time around (should have read the handbook - my fault). So, finally after my second and final visit to the DMV I passed on Thursday, November 18, 2010. Thank God you're able to re-take the exam up to 3 times otherwise I would be in trouble.
Now on the Milaniya front she is taking a new medication called lipitor to reduce her cholesterol. She's into the 2nd week and will be going for lab work tomorrow to see if there is improvement. Some of the recent issues we are seeing is her front tooth begin to turn color. Not sure if it is due to her meds or from a fall she had so keeping close eye on it. Not sure if any of you AGS families have issues with teeth color changes?
Well hope everyone has a safe and Happy Thanksgiving. If you have a good Thanksgiving recipe I'm open for some ideas?
Stephanie
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Where has the time gone? This month has been particularly busy for myself. I've officially become a California resident. I was quite surprised by the process of getting my car registered and how much it cost! The crazy thing about the process was a written exam I had to pass in order to receive a drivers license. I have to admit was caught off guard and unfortunately did not pass the first time around (should have read the handbook - my fault). So, finally after my second and final visit to the DMV I passed on Thursday, November 18, 2010. Thank God you're able to re-take the exam up to 3 times otherwise I would be in trouble.
Now on the Milaniya front she is taking a new medication called lipitor to reduce her cholesterol. She's into the 2nd week and will be going for lab work tomorrow to see if there is improvement. Some of the recent issues we are seeing is her front tooth begin to turn color. Not sure if it is due to her meds or from a fall she had so keeping close eye on it. Not sure if any of you AGS families have issues with teeth color changes?
Well hope everyone has a safe and Happy Thanksgiving. If you have a good Thanksgiving recipe I'm open for some ideas?
Stephanie
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Follow Me on Facebook
Friday, October 29, 2010
What a crazy week
All:
Well this week has got to be one of craziest weeks. Milaniya had 2 big appointments on Wednesday which went okay. Her first appointment was with her Pediatrician for a physical work up at Lucille Packard at Standford. One of the things we needed to address is the wax build up in her ear we had to flush out, which was interesting. I knew Milaniya had been complaining about her ears, but when we saw what was built up in them it was shocking! She cried and fought myself and the nurse the whole time. Needless to say, she did not like this at all! She actually does better with shots unfortunately.
After her appointment I decided to take her to Chuck E Cheese for lunch before we head to the 2nd appointment with GI. This is when the day took a turn for the worse. As I was driving out of the parking lot of Chuck E Cheese to a local service road my vehicle went completely out of control. I did not realize what was happening with my car. All I knew is I could not control my steering wheel and saw all this smoke coming from the engine. Thank GOD we were not on the major highway or near any pedestrians. I had hit a side walk which helped stop the vehicle. I managed to push the vehicle to a local business parking lot in order to call Eddie and AAA towing. It appears my steering belt completely broke off and the entire radiator / coolant system overheated. I ended up having to replace the entire radiator, coolant system, 2 belts, and something else the mechanic said I needed.
The day had me completely on edge where I felt life flash before my eyes. I truly appreciate the man above looking out for myself and Milaniya. Things certainly could have been worse, but appreciate we are both safe and sound. Through all this Eddie was able to come and pick us up to head to the GI appointment still. Upon arrival at GI we had to get status on what to do next on her cholesterol meds, see her weight gain, and even discuss other options on vitamin K. Her Rx for this has nearly doubled in price, but can't figure this out. So, we are working on other options. I'm just happy Kathleen Cox (GI) really likes Milaniya's progress overall. This is the news we live for.
Hope everyone has a safe and Happy Halloween. Milaniya will be a princess this year and will be posting pics soon of the big day.
What are you going to be for Halloween?
Well this week has got to be one of craziest weeks. Milaniya had 2 big appointments on Wednesday which went okay. Her first appointment was with her Pediatrician for a physical work up at Lucille Packard at Standford. One of the things we needed to address is the wax build up in her ear we had to flush out, which was interesting. I knew Milaniya had been complaining about her ears, but when we saw what was built up in them it was shocking! She cried and fought myself and the nurse the whole time. Needless to say, she did not like this at all! She actually does better with shots unfortunately.
After her appointment I decided to take her to Chuck E Cheese for lunch before we head to the 2nd appointment with GI. This is when the day took a turn for the worse. As I was driving out of the parking lot of Chuck E Cheese to a local service road my vehicle went completely out of control. I did not realize what was happening with my car. All I knew is I could not control my steering wheel and saw all this smoke coming from the engine. Thank GOD we were not on the major highway or near any pedestrians. I had hit a side walk which helped stop the vehicle. I managed to push the vehicle to a local business parking lot in order to call Eddie and AAA towing. It appears my steering belt completely broke off and the entire radiator / coolant system overheated. I ended up having to replace the entire radiator, coolant system, 2 belts, and something else the mechanic said I needed.
The day had me completely on edge where I felt life flash before my eyes. I truly appreciate the man above looking out for myself and Milaniya. Things certainly could have been worse, but appreciate we are both safe and sound. Through all this Eddie was able to come and pick us up to head to the GI appointment still. Upon arrival at GI we had to get status on what to do next on her cholesterol meds, see her weight gain, and even discuss other options on vitamin K. Her Rx for this has nearly doubled in price, but can't figure this out. So, we are working on other options. I'm just happy Kathleen Cox (GI) really likes Milaniya's progress overall. This is the news we live for.
Hope everyone has a safe and Happy Halloween. Milaniya will be a princess this year and will be posting pics soon of the big day.
What are you going to be for Halloween?
Monday, October 25, 2010
More appointments....
Hi Everyone,
We are going for another round of appointments, which includes some routine blood work this time. This Wednesday Milaniya will be meeting her Pediatrician for the first time and will be doing another GI follow-up. Things have been going really well for her, but still has those xanthomas that seem to be popping up everywhere around her legs, feet, hands, and even slowly around her eye. I hope to get some answers on a medication they hope to put her on called statens (hope this is the proper spelling)to help reduce her cholesterol that's at 900 last time we checked.
Well this is it for now. I hope to share some pictures of how bad her xanthomas have gotten and share a little bit more information about what this is.
Good night!
Stephanie
We are going for another round of appointments, which includes some routine blood work this time. This Wednesday Milaniya will be meeting her Pediatrician for the first time and will be doing another GI follow-up. Things have been going really well for her, but still has those xanthomas that seem to be popping up everywhere around her legs, feet, hands, and even slowly around her eye. I hope to get some answers on a medication they hope to put her on called statens (hope this is the proper spelling)to help reduce her cholesterol that's at 900 last time we checked.
Well this is it for now. I hope to share some pictures of how bad her xanthomas have gotten and share a little bit more information about what this is.
Good night!
Stephanie
Thursday, October 21, 2010
Hi everyone,
Just amazed each day how many people battle Alagilles Syndrome. This video really puts a smile on my face to see how positive people can be and are going through similar situation as myself. Here is a video of a loyal fan of the Ellen Show who has a son battling Alagilles as well. This was to good not to share. :-)
Just amazed each day how many people battle Alagilles Syndrome. This video really puts a smile on my face to see how positive people can be and are going through similar situation as myself. Here is a video of a loyal fan of the Ellen Show who has a son battling Alagilles as well. This was to good not to share. :-)
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